Pages

Friday, November 9, 2012

A Gift for Lucy

Lucy is four years old and she's smart, determined, and very, very funny. She loves all the things four-year-old girls love: princesses, preschool, and her incredible family.

Jocey, Lucy, Cherisse, Chad, and Dallin

Although her mind is sharp, Lucy's body is failing her. Like Nate, Lucy came home from the hospital a perfectly healthy baby. Then at four months old, she was diagnosed with Spinal Muscular Atrophy (SMA) Type 1. SMA, like SMARD, is a neuromuscular disease. It is degenerative and it is terminal. Most SMA Type 1 babies don't make it past their second birthday. Lucy just celebrated her fourth!

Lucy shares her birthday with her sister!

Lucy's life and spirit are miraculous. Here is Lucy wanting to swim "all by herself". She craves independence just like all four-year-olds do, but her body stands in the way. Despite her limitations, she has an incredible excitement for life and wants to get out and explore the world.

Lucy's family is in need of a new wheelchair accessible van. This van will be fully automated so Lucy will be able to drive her own power wheelchair up a ramp into the van, lock it in place, and have it act as a carseat for her. Her mother, Cherisse, will no longer have to lift Lucy, her wheelchair, a ramp, and all of her equipment every time they leave the house. It will mean getting out of the house more. It will give Lucy the freedom and independence that she needs so desperately. It will completely change day-to-day life for this wonderful family.

Let me tell you a little bit about Lucy's amazing mom, Cherisse. She cares for Lucy in a way that I think few mothers out there are capable of. She cares for her other two children just as well. And her husband. And somehow she still has more time and energy and love to give to everyone else. She has been a huge help and inspiration to me as I've tried to navigate becoming a special needs mom. Basically, she's superwoman. You'll never hear her complain about the physical toll transporting Lucy is taking on her, but this van is going to change her life as much as it will change Lucy's.

Lucy and her family are a true light in this world. Read their blog and see for yourself. It's a reminder to all of us to treasure the special everyday moments that happen within your family.

If you want to help Lucy get a new van for Christmas, please donate here. I know Lucy is on my Christmas shopping list this year!